My team said to use a moisturiser that you were already used to as you can be very sensitive and they want to prevent redness or rashes. I used Radiaderm R1 and R2 that I patch tested before radiotherapy. This was received after an Instagram win from Dr Liz OāRiordan. I had no issues with redness or warmth. R1 was a cooling gel and R2 was soothing cream.
Many others have had Flamigel, which can be prescribed. My team were very reluctant to give me anything and say any good moisturiser would do, preferably fragrance free. For me I found some smells off putting after chemo so fragrance free was great.
Iāve seen good reports of Aveeno daily moisturising fragrance free (green writing) or Epaderm, which is used for eczema.
Morning all. I saw my oncologist yesterday in readiness for my mastectomy and for the second time she spoke about the HER2 Radical trial. Has anyone else joined this trial??
I obviously have to wait for the outcome of my histology post surgery but she has discussed this with me twice so keen to get others views if you have been offered this xx
@Linda_Corinne its called the radical trial.
Itās about having less Phesgo/ herceptin after surgery. You have to have had a PCR after chemo and the suggestion is six months rather than 12 of the injections to reduce risk of cardio toxicity so that would be 9 rather than 18 in total
@mrsjelly Iām just sitting in the chair waiting for my zoledronic acid infusion and Phesgo injection but wanted to jump on here and wish you all the luck in the world for todayās 1st chemo. You can do it! Chemoās tough but you are tougher!
Hi, just wondering if anyone is/will be doing 18 cycles of phesgo (before surgery)?
Iām hoping the nurse has it wrong and she meant 18 weeks (so 6 x 3 cycles), but until I speak to my consultant and ask, I thought Iād ask on here - just to see if itās a possibility really!
@leelee1 I had 5 rounds of phesgo before surgery. Iām due have 18 rounds in total. I donāt see how you could have 18 rounds before surgery, as that would take almost a year (with 1 round every 3 weeks) and Iāve never heard of or read about anyone waiting a year for surgery. Iād definitely query it xx
Does anyone know whether zoletronic acid infusions are standard treatment? Iāve read quite a lot of people mentioning them on here, but itās not something that my oncologist has ever mentioned to me so just wondering x
Thanks @rrey thats really useful to know, as I was wondering about the year too!
I had my first EC on 31st Dec, and I canāt start the phesgo until thatās over, so if it is 18 rounds, that would take me to next March!
I will definitely ask when I see my consultant. I have my next chemo on Tuesday so will see if the unit can tell me too.
Actually if you had surgery after a few rounds then phesgo again, I suppose that may be an option tooā¦ hmm, we shall see!
I had 18 cycles of Herceptin and believe itās also 18 cycles of Phesgo ( a year in total) some are on the HER2 radial trial to see if 9 cycles is enough. Studies so far have shown having 9 cycles is as good and less cardio toxic. Never heard of all 18 before surgery. I had my surgery first then chemo/herceptin. I would call your team and get clarification. Many of us mishear things as we are bombarded with so much information.
I donāt think Zoledronic is standard for everyone. I know itās now included in the up to date NHS predict score and the percentage of benefit needs to be weighed up with the possible side effects. I believe it is more common in post menopausal women as our bone density has already started to diminish with age. Itās more common in those who have had lymph node involvement but other factors can be considered. I was bilateral with two primary cancers so I think thatās why I was offered it.
@leelee1 i had 3 rounds of ec then moved onto paclitaxel. I had my first phesgo on the same day as my first paclitaxel. That was 22nd August. Iām due to have my 8th round of phesgo tomorrow so itās putting me finishing around august this year. I continued to have phesgo every 3 weeks after finishing chemo and through surgery. Iām sure they will be able to clarify it for you .
Thanks @naughty_boob - theyāve not told me what my nhs predict score is. I wasnāt menopausal before chemo but havenāt had a period now since July and I finished chemo in October. No idea if theyāll come back - is there some kind of test you can have to see if youāre in permanent menopause do you know? X
Hi Sal,
Iām Her2, have also delayed signing up and reached the point where it would be nice to have a buddy.
I had neo-adjuvant chemo but only a partial response with remaining tumour of 13mm which started at 50-60 mm. Itās because of that I have joined the forum as itās now likely I will need Kadcyla which is a targeted chemo for Her2 and Iām hoping that people will share their experiences of side effects?
Lots of love to you Sal and to all who read this post and are going through their own struggles xxx
From being menopausal for some time before my diagnosis, I believe there was a FSH (follicle stimulating hormone) but itās not reliable. From what Iāve read it can be one reading on one day and on another something different.
I would call your team and ask them about your Predict score and if you need bisphosphonates. Have you been offered a dexa/bone scan? I believe itās normal to check bone density and if there is osteopenia (beginning of osteoporosis) they can start you on the bisphosphonates.
My period as not come back yet eitherā¦ but all this week i am having period pains on and off and feel mega bloated. But still nothing! Have you had any symptoms? I got face full of spots too.x
@jeml ive not had any symptoms to suggest periods are on their way back. But then Iām not sure Iāve had any symptoms of menopause either. I do get some hot flushes and hot at night, but itās not as common now as it was towards the end of chemo and just after chemo. So I put that down to the chemo. May have to just wait and see x
Had my first appointment with the oncologist today and whilst I knew I had breast cancer I didnāt know everything. I have Multi focal IDC Her2+ve. I start EC on 31st January 3 weekly for 4 session the Docetaxel 3 weekly for 4 sessions. Then my operation and then radiotherapy. For the next year I will also have Pertuzumab and Trastuzumab injections. What a cocktail
I am really positive as found out today it is only in my left breast and lymph nodes and no where else. Small victories.
.
. Iāll get in touch with them and ask. Iāve never had a decs/bone scan and itās never been mentioned to me xx